“I want to raise awareness about arthritis in young people”

30 October 2019
Olivia luke doing exercise and ready for a night out.

Olivia Luke was diagnosed with juvenile idiopathic arthritis at the age of 5, following repeated visits to doctors, after her mum noticed she was struggling to crawl.

After a ‘difficult’ trip to A&E recently, which required lots of explaining about her condition, she wants to share her story with others and help raise awareness.

Arthritis affects kids, young people and old people, I want to make people more aware, including doctors and nurses.

My name is Olivia and I am Versus Arthritis. I am a JIA warrior and I will stay strong

At first the doctors said there was nothing wrong with me, and despite having a swollen knee, I was still a bubbly kid, so the symptoms were dismissed. After seeing a private physio, I was referred and finally diagnosed at Milton Keynes hospital.

Sometimes, it feels like no-one understands. I experience this more now I’m taking myself to hospital and seeing the response from some people.

I was put on methotrexate at the age of 6

During this time, I continued with my gymnastics (artistic), competing at county level. At the age of 10, I stopped taking methotrexate and carried on being active.

Exactly one year later my symptoms came back, I was 11 and I could barely move. My knee and ankle became so swollen I couldn’t get clothes or shoes on, and I was put back onto steroid injections and physio.

Then the steroid injections stopped working and I was back on methotrexate. Added to this, I was sent to a foot specialist in Oxford due to my flat feet and insoles were ordered.

Shoe shopping became a hideous experience because nothing fitted the chunky insoles. My friends all wore dainty slip-ons, and these were not an option for me. The methotrexate started to make me sick and tired.

When I was 12, I was desperate to be like everyone else

My consultant put me on injections, the sickness stopped, and my pain improved. I was still active, taking part in gym competitions and I even started playing rugby!

I hated injecting myself though, it didn’t feel normal, so I decided to stop and hid the medication in my room.

Within the space of 4 months I could barely move, the pain was unbearable

I limped around school. My mum was distraught and couldn’t understand why the medication had stopped working. How could I tell her?

I had to admit it in the end due to the pain I was in. My mum cried, I cried - but I was so angry. Why me? Why not someone else? Why hadn’t I grown out of it?

I ended up back at the consultant, still on methotrexate, plus sulfasalazine, plus ibuprofen and steroids.

I gained weight from taking steroids, I felt very body conscious

I felt like people were looking at my swollen knee and the fact I was limping. I felt ugly and I started to question everything. I stopped the gymnastics, because I thought what was the point?

I gave up the rugby as well. I steadily put on weight due to the steroids and at the age of 15 I didn’t recognise the person in the mirror. I started to shut people out and push people away.

A year later, I had gained nearly two stone in weight and didn’t know who Olivia was anymore.

I started to follow people on Instagram who kept fit and went to the gym

This spurred me on to join a gym and I got talking to a lady with lupus who knows my mum. She helped me get into doing cardio and as she had been on steroids, she understood what it’s like.

I’ve been working with a personal trainer for a while now. She’s called Kelly and she’s amazing.

She’s been learning with me about what exercises work for me and adapting my workouts to how I’m feeling. She’d never worked with anyone with arthritis before or someone so young with the condition, so I’m really honest about everything and make sure she understands me.

I love exercise, I lift weights and I work hard. It does me good and helps to get the frustration out, even if I don’t always feel like doing it.

I’ve returned to my gymnastics club and gained a coaching qualification. I’m taking a Level 3 Diploma Sports course and I dream of becoming a police officer.

When I started college, I had to let people know about my arthritis, this was hard

My head of department has been supportive, and we work around how I am feeling. For example, in the winter I won’t do football outside, but I can do netball inside. If I can’t make an early start, I can access the content on Moodle or keep up to date on email.

When I went to A&E recently with really bad knee pain, it was difficult to explain what I needed and to feel understood. I want to make people more aware and I want to empower people with arthritis!

I’d definitely say keep talking to your family as much you can

My family have been there for me. My mum, dad and nan and granddad have all helped me.

My boyfriend has been really good and his brother, who is 25, also has arthritis. Having him there has helped.

Also, my half-sister has M.S and she’s been brilliant. We share how we are feeling and it’s nice to have someone to sulk with. Her hands and legs are affected, and we have some similar symptoms, like feeling really fatigued.

My close friend Chloe knows about the good and bad bits, like if I am flaring, she’ll notice when sometimes I can’t always tell.

My dream is to be out there! Spreading the word and raising awareness

Some people don’t understand arthritis and how it impacts people, young and old - and their families. I’m aware that my condition changed not only my life but my parents’ lives too.

My advice to others with arthritis is don’t give up, make make sure you build up relationships with people you can trust and talk to. Some days I could run a marathon and some days I struggle to get out of my bed! I refuse to give up.